Show HN: I've created a site about Bone Marrow Donation(cheekswab.org)
cheekswab.org
Show HN: I've created a site about Bone Marrow Donation
http://www.cheekswab.org
Hi HN,<p>I've posted a couple times here before (mostly within posts pertaining to Amit Gupta's search for a bone marrow donor) and I wanted to share a site I've been working on for the past 5 months or so that recently went live. I'm going on my fifth year of being an Acute Myelogenous Leukemia survivor, and while I didn't need a bone marrow transplant myself at one point it was a very real possibility. At that time I became aware of the lack of minority bone marrow donors and made a promise to myself to try to do something about it if I were to survive. This site is something of a fulfillment of that promise.<p>I don't know if this is explicitly HN-worthy, given that it's not a programmatically-impressive web app or a strictly technical exercise. But given the publicity that Amit's search for a donor has created for the cause, and some previous posts highlighting concerns around bone marrow donation, I felt like this submission may be relevant to the community. In the end, hacking is very much about finding a problem and solving it using technology. I was dissatisfied with the websites I found and the explanations I was given, so this is my attempt to solve that problem.<p>If this post gets any notice the website may very likely go down given my shared hosting plan. I apologize in advance for that.
16 comments
Hi HN,
I've posted a couple times here before (mostly within posts pertaining to Amit Gupta's search for a bone marrow donor) and I wanted to share a site I've been working on for the past 5 months or so that recently went live. I'm going on my fifth year of being an Acute Myelogenous Leukemia survivor, and while I didn't need a bone marrow transplant myself, at one point it was a very real possibility. At that time I became aware of the lack of minority bone marrow donors and made a promise to myself to try to do something about it if I were to survive. This site is something of a fulfillment of that promise.
I don't know if this is explicitly HN-worthy, given that it's not a programmatically-impressive web app or a strictly technical exercise. But given the publicity that Amit's search for a donor has created for the cause, and some previous posts highlighting concerns around bone marrow donation, I felt like this submission may be relevant to the community. In the end, hacking is very much about finding a problem and solving it using technology. I was dissatisfied with the websites I found and the explanations I was given, so this is my attempt to solve that problem.
If this post gets any notice, the website may very likely go down given my shared hosting plan. I apologize in advance for that.
I've posted a couple times here before (mostly within posts pertaining to Amit Gupta's search for a bone marrow donor) and I wanted to share a site I've been working on for the past 5 months or so that recently went live. I'm going on my fifth year of being an Acute Myelogenous Leukemia survivor, and while I didn't need a bone marrow transplant myself, at one point it was a very real possibility. At that time I became aware of the lack of minority bone marrow donors and made a promise to myself to try to do something about it if I were to survive. This site is something of a fulfillment of that promise.
I don't know if this is explicitly HN-worthy, given that it's not a programmatically-impressive web app or a strictly technical exercise. But given the publicity that Amit's search for a donor has created for the cause, and some previous posts highlighting concerns around bone marrow donation, I felt like this submission may be relevant to the community. In the end, hacking is very much about finding a problem and solving it using technology. I was dissatisfied with the websites I found and the explanations I was given, so this is my attempt to solve that problem.
If this post gets any notice, the website may very likely go down given my shared hosting plan. I apologize in advance for that.
I hope nobody takes offense if I don't reply to every individual feedback item. I do appreciate all the feedback I've received thus far, and all of it is constructive in my book. Whatever makes the message/site better and more effective is in line with my goals. No better place for that kind of expertise than HN.
Just one disclaimer: I've received a few emails asking about overarching registration policy, the implementation for a buyer/seller market for donations, etc... I'm really not the right person for this type of question. Most of the time, if you're identifying a procedural inefficiency I agree with you, but I can't offer much input. Cheekswab as a site is not officially partnered with the NMDP in any capacity. Cheekswab isn't even a non-profit. Cheekswab is a website that I created in my bedroom/Starbucks in hopes of condensing some of the info I've found across the Internet on different sites and to personalize the cause. Not a cop out, just an explanation of scope.
Just one disclaimer: I've received a few emails asking about overarching registration policy, the implementation for a buyer/seller market for donations, etc... I'm really not the right person for this type of question. Most of the time, if you're identifying a procedural inefficiency I agree with you, but I can't offer much input. Cheekswab as a site is not officially partnered with the NMDP in any capacity. Cheekswab isn't even a non-profit. Cheekswab is a website that I created in my bedroom/Starbucks in hopes of condensing some of the info I've found across the Internet on different sites and to personalize the cause. Not a cop out, just an explanation of scope.
Hi Daniel, need help of any kind? My email is in my profile.
Why don't you form some tie up with amitgupta's website. It has received so much publicity for the cause so all that effort don't go waste.
Not to put a downer on what is a worthy idea, but:
> A small percentage (1.34%) of donors experience a serious complication due to anesthesia or damage to bone, nerve or muscle in their hip region.
There are very few things I would consider doing if they involved a 1-in-75 risk of serious health problems, particularly in a country like the USA where access to medical care is not a given.
> A small percentage (1.34%) of donors experience a serious complication due to anesthesia or damage to bone, nerve or muscle in their hip region.
There are very few things I would consider doing if they involved a 1-in-75 risk of serious health problems, particularly in a country like the USA where access to medical care is not a given.
This is awesome, however I think it needs to be promoted much louder that you can get a cheek swab kit sent to you via mail for FREE by signing up at http://marrow.org/. I think most people look at sites, like this one, wanting to help but not understanding that it's so incredibly easy to register and you don't have to drive off somewhere or schedule anything.
Thanks. For whatever it's worth, I just signed up and wouldn't have if you hadn't posted that.
And now my wife has too. Thanks again.
Beautiful website. Also, I don't normally read the About section of websites, but your Founder's Story was excellent. Very well written, couldn't stop reading it:
http://www.cheekswab.org/about-cheekswab/founders-story/
I don't have any technical feedback for you on the site, but I will say that it has finally pushed me over the edge. I just ordered the kit. Thanks for putting the site together, I think you've made a very nice contribution to the web and to humanity.
I don't have any technical feedback for you on the site, but I will say that it has finally pushed me over the edge. I just ordered the kit. Thanks for putting the site together, I think you've made a very nice contribution to the web and to humanity.
Totally agree. Very compelling story.
Also really like your response here: http://www.cheekswab.org/about-cheekswab/questions-and-answe...
This makes the whole thing feel very personal!
Also really like your response here: http://www.cheekswab.org/about-cheekswab/questions-and-answe...
This makes the whole thing feel very personal!
Great work on putting the site together. The design is beautiful. I was able to find the theme on themeforest, but it looks like you customized it in a really nice way. May I ask who designed the logo and background?
By the way, if anyone else is looking for the theme, you can find it here:
http://themeforest.net/item/etherna-powerful-and-flexible-wo...
By the way, if anyone else is looking for the theme, you can find it here:
http://themeforest.net/item/etherna-powerful-and-flexible-wo...
That is indeed the theme! I had never used themeforest before this site and it was absolutely a worthwhile (and minimal) expense.
The logo was done by a very talented friend of mine, who has a completely non-updated portfolio at http://ellykim.net.
The background I actually found from a site I found on HN: http://www.subtlepatterns.com. I just made it blue in photoshop.
The logo was done by a very talented friend of mine, who has a completely non-updated portfolio at http://ellykim.net.
The background I actually found from a site I found on HN: http://www.subtlepatterns.com. I just made it blue in photoshop.
I think this looks great, and hopefully will encourage a ton of people to join the registry! My only feedback is - I think the slideshow on the homepage moves a little fast. When I went to the page and started reading, it moved on to "Joining the Registry" before I finished reading. I'd recommend either slowing down the progression, or making it all manual (only change when the user rolls over a section).
It absolutely moves to fast. Love the site though. I would think about putting more information above the fold or incorporating it into the slider a little better. Make the about more clear. Love it though.
I suggest also encouraging people to go donate whole blood, and signing up for the marrow program there. Maybe even help them find a collection place and set an appointment. Two birds, eh?
I've donated blood, platelets and (last year) 1 liter of bone marrow. As feel-good as it is to help a specific person against very large odds, blood and platelets help many more people.
I've donated blood, platelets and (last year) 1 liter of bone marrow. As feel-good as it is to help a specific person against very large odds, blood and platelets help many more people.
Lovely site, the only comment I have is a more urgent call to action and in this line "Please consider joining the National Bone Marrow Registry today, and enter the lottery to save a life." I expected the "enter the lottery to save a life" to be a link or call to action.
So I would either take the red away or make it go somewhere, perhaps the registration?
So I would either take the red away or make it go somewhere, perhaps the registration?
I absolutely love your calling the site Cheekswab, a constant, subtle reminder of how easy and painless registration is. However, I agree with others that what's missing is a clearer action call. Also: will non-minority donors ignore the site as soon as the purpose of recruiting minority donors is stated? edit: grammar
I just wish "Be The Match" (marrow.org) was a better run charity.
http://www.charitynavigator.org/index.cfm?bay=search.summary...
http://www.charitynavigator.org/index.cfm?bay=search.summary...
The site looks great-- I think the purpose that it serves is very inspiring. Continue to tell stories like yours on your site, and I'm sure it will reach the audience you want faster.
This looks great, but I'm sure if we were able to see who was registered and not registered online, it would help accelerate registration. What are the complications here?
Great question. I know that you can call 1-800-MARROW-2 and speak to a representative from the NMDP to see whether or not you're on the registry, but I'm not sure if there's an automated system in place that allows you to do so. To the best of my ability the rep "types your name into the computer"... whether or not that information is publicly accessible is a question better suited for them.
Thanks so much for making a site like this and sharing it on HN. It was veyr informative and inspired me to sign up. I have a kit on the way!
Didn't expect to see familiar photos when I visited the site, I'm a 3rd-year at UVA right now. Sick site man, and for an excellent cause.
The main problem with the involved donations like these (from my laymen perspective) is to convince me, the visitor, to donate. Everything else is much lower priority.
While your site is informative, and pretty, it doesn't convince me. There's no call to action. There's no short one-sentence explanation that it's safe. There's a ton of visual distracting stuff on the front page.
I think this is a much better approach:
A good photo of a female patient or a baby, and words:
"Donate bone marrow"
"Save her life"
"It's safe"
While your site is informative, and pretty, it doesn't convince me. There's no call to action. There's no short one-sentence explanation that it's safe. There's a ton of visual distracting stuff on the front page.
I think this is a much better approach:
A good photo of a female patient or a baby, and words:
"Donate bone marrow"
"Save her life"
"It's safe"
You're right on with identifying the number one problem I knew I would face when Cheekswab was even just a thought in my mind: how do I make people care? It's still something I think about constantly, both when I'm conducting a drive or staring at my computer.
I hear what you're saying when it comes to the photo of the patient/baby, but the number one thing I didn't like about some of the existing sites out there is that they read like a brochure. The reason why people donated for Amit Gupta is because even if they didn't know him face-to-face, they felt some sort of personal connection to him via his products or technical notoriety or positive reputation or whatever. Maybe even the bonds of being a technical guy in a technical industry. I distinctly wanted to avoid having to go the route of finding a stock image of a bald chemotherapy patient or teary mother because I feel like it's manufacturing sentimentality. We're surrounded by manufactured sentimentality concerning cancer. Turn on any episode of House and you'll see what I mean.
I feel like too much of that detracts from the cause, because cancer, sickness and bone marrow transplants are real. They happen to real people, with real families who have no idea what to do or where to turn. I do share my personal story with cancer on the "Founders Story" page, but admittedly it's (very) long and not everyone will take the time to read it. But some do, and early feedback from many is that it helps them empathize in a way they've never done before. And there's no way for me to condense that story into three quick-hitting bullets on the homepage.
There very well may be nothing I or anyone else can write on a website to convince someone to donate marrow. There are way too many factors that I cannot foresee or control that will impact that decision. But if that person's life is ever touched by circumstances where a bone marrow donation is necessary, my hope for the website is that at least they'll already be aware that the cause exists and know where to find more information.
But your feedback about the homepage in general raises points that I will definitely consider.
I have some more ideas in the pipeline that I hope will help further personalize the cause. I've shot a video with a friend who recently got called in for a marrow donation. I've been in touch with an old classmate on Facebook who took part in a PBSC donation and met her donor. I'm convinced that it's these types of things that will create conviction and empathy in others, and I'm working on it.
I hear what you're saying when it comes to the photo of the patient/baby, but the number one thing I didn't like about some of the existing sites out there is that they read like a brochure. The reason why people donated for Amit Gupta is because even if they didn't know him face-to-face, they felt some sort of personal connection to him via his products or technical notoriety or positive reputation or whatever. Maybe even the bonds of being a technical guy in a technical industry. I distinctly wanted to avoid having to go the route of finding a stock image of a bald chemotherapy patient or teary mother because I feel like it's manufacturing sentimentality. We're surrounded by manufactured sentimentality concerning cancer. Turn on any episode of House and you'll see what I mean.
I feel like too much of that detracts from the cause, because cancer, sickness and bone marrow transplants are real. They happen to real people, with real families who have no idea what to do or where to turn. I do share my personal story with cancer on the "Founders Story" page, but admittedly it's (very) long and not everyone will take the time to read it. But some do, and early feedback from many is that it helps them empathize in a way they've never done before. And there's no way for me to condense that story into three quick-hitting bullets on the homepage.
There very well may be nothing I or anyone else can write on a website to convince someone to donate marrow. There are way too many factors that I cannot foresee or control that will impact that decision. But if that person's life is ever touched by circumstances where a bone marrow donation is necessary, my hope for the website is that at least they'll already be aware that the cause exists and know where to find more information.
But your feedback about the homepage in general raises points that I will definitely consider.
I have some more ideas in the pipeline that I hope will help further personalize the cause. I've shot a video with a friend who recently got called in for a marrow donation. I've been in touch with an old classmate on Facebook who took part in a PBSC donation and met her donor. I'm convinced that it's these types of things that will create conviction and empathy in others, and I'm working on it.